12-08-2014, 11:02 PM   #61
lubnaexperts
 
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Hi my little penguin , yes am spreading it all over the day and he keeps saying its filling my stomach only for 20 mins only then am feeling my stomach empty and this hunger sensation making him very nervous . HIs GI allowing him to take only 7 up which he hate it already .
12-08-2014, 11:45 PM   #62
Maya142
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How old is your son?

We didn't do EEN (just supplemental EN) but my daughter who is 92lbs and 5'2 has to have at least 2200 calories to gain weight according to her nutritionist. If she was exercising or more active (and right now, she isn't very active because of her arthritis) she would have to have even more.

I can imagine how awful is must be for him to be hungry all day. Any chance you could see a nutritionist? Or at least ask about allowing broth? Hope things get better soon.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-08-2014, 11:58 PM   #63
lubnaexperts
 
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hi maya , he is 17 yrs old and he is active and unfortunately no specialised nutritionist here all what available is centers concerned of weight loss issues as a kind of business I dont know if its correct to raise the calories from 2500 to 3000 will help him and he will not feel hungry any more
Maya I want to ask you do you have any idea how long it takes the fecal calprotectin results to come down proximately
12-09-2014, 12:02 AM   #64
Maya142
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I'm not sure exactly I think someone (MLP? Clash?) said it can rise quickly but takes a while to fall.
12-09-2014, 05:52 AM   #65
my little penguin
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Fecal cal
Takes 3-6 months to lower
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12-09-2014, 10:19 PM   #66
Tesscorm
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My son was almost 17 when he did EEN, he was taking in 3000 calories per day in formula plus he was allowed broth, jello, popsicles, freezies and clear drinks (7-up, ginger ale, gatorade, etc.). My son didn't 'drink' his formula but had it overnight through a naso-gastric tube. This meant that he did feel hunger by dinner (as all his 'food' was given overnight), a bowl of broth helped quite a bit (he would have two to three bowls over the day) and distraction was important.

Re liver - at one point, my son's ALT and AST figures were slightly elevated, this was after he'd finished 6 weeks of EEN and had then been on supplemental EN for over a year, his GI's comment was that his elevated hepatic transaminases (ALT and AST) was likely secondary to his ongoing EN. Unfortunately, I don't have more info than this as this comment was included in the GIs summary notes when my son transferred to an adult GI. Having said this, my son continued with supplemental EN and his ALT and AST returned to normal after a few weeks.
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Tess, mom to S
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-16-2014, 04:40 AM   #67
lubnaexperts
 
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hi all , my son after complete 12 days of modulen powder his calprotectin results dropped from more than 1000 to 69 which was amazing, his doctor told us he should complete 6 weeks and my son so disappointment any idea how long he should stay thank you
12-16-2014, 09:27 AM   #68
Clash
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That's great that the EEN is working. It has near the same results as pred at quelling the inflammation but only while he is on it. When the EEN is finished the inflammation will return, same with steroids. Usually, while doing EEN the GI also adds a maintenance med. These meds can take a couple months to reach full therapeutic levels so you stay on the EEN for 6-8 weeks to give the maintenance med time to take over.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
12-16-2014, 12:47 PM   #69
lubnaexperts
 
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hi clash,
he is already now on 6 mg ento cort and 40 days on imuran 50 mg and pentasa granules

the doctor decided today to convince him to complete 6 weeks more but he dont want and we came to an agreement to finish 4 weeks then will see him again
12-16-2014, 01:12 PM   #70
Clash
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That sounds good then. It can take Imuran up to 3 months to reach full therapeutic levels. And entocort can take a bit too but not as long.

At this point, you probably cant be certain whether it is the meds or EEN bringing the inflammatory levels down so I can see why the GI wants him to stay on the EEN. Once he comes off the formula feeds they may run tests to see where the Imuran is at levels wise. And with time you can determine if it was the EEN affecting his inflammatory markers or if the Imuran has kicked in.
01-02-2015, 05:56 PM   #71
Spooky1
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Hi Lub, How is your son doing? I could eat boiled sweets, but for me with no real fruit as I have an issue with fructose. Would he be allowed wine gums or jelly babies? Sweets used to help fill me up. I know the hunger too. I, like many people, used to perk up after a meal, unfortunately we don't get that on liquid feeds. In fact its a bit depressing not to eat and to feel hungry. Other than sweets I don't know what to suggest, but good luck.
01-03-2015, 01:29 AM   #72
lubnaexperts
 
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hi spooky1 and clash,

My son is fine yesterday completed one month pure modulen diet and his calprotectin 42 normal now and after one hour he will have colonoscopy as he refuse to continue more than that
so his doctor told him that the test is good indicator but not giving the full image so they made a deal and will do colonoscopy so the doctor will see if he can start lowfflex diet or continue at lease 2 weeks more on modulen diet and today we will see

thanks for the information and asking about him I do really appreciate that hope all the ppl with this disease and any other disease to get well soon and enjoy their life
01-03-2015, 07:10 AM   #73
Spooky1
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Lub, you have the most amazing attitude. You are obviously one very caring mum, and I think you must have really been brilliant at persuading your son to continue otherwise I think he might have cheated on the Modulen diet long before now. Well done. I hope his colonoscopy goes very well and that he gets his own way and starts that Loflex diet today, lol.

Give him our best wishes, especially for the highly undignified colonoscopy.
01-03-2015, 08:24 PM   #74
lubnaexperts
 
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thank u spooky1 for you nice and warm words
he did the colonoscopy and an amazing results we got thanks for god a complete mucosal healing was noticed so they did not even take any biopsy then the doctor was really surprised and my son win the deal so the doctor said as a doctor i wish he will complete 8 weeks on modulen but as per deal I will let him introduce small amount of white rice and potato and very very little white fish for the coming 10 days and will see caplrotectin weekly then we will see accordingly what to introduce more food , and as will he will continue modulen with these little amount of food and my son was so so happy and fully agreed

thanks for all of u for asking and for the good informatiom
01-04-2015, 11:40 AM   #75
Spooky1
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That's really great news. I sincerely hope your son is happier. Nice to know that the doc is happier too, smiles all round.
01-08-2015, 03:01 AM   #76
lubnaexperts
 
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hi all , my son start eating very small amount of steamed rice and potato and very very small pc of white fish after the colonoscopy only once a day and still on modulen powder the fecal calprotectin rises to 277 again and after 2 days 931 am felt worried and the doctor saif let continue in our plan for other 2 weeks and test it again as by this date imuran will be completely kicked in and complete 3 months . any idea please
01-08-2015, 09:52 AM   #77
Spooky1
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I have issues that are similar, I stick to salmon and potatoes, with a bit of mackerel in spring water. Can he have boiled mints to suck? I always whinge that my intestine hates any kind of food. I'm sorry I'm not the only one.

keep us posted.
01-09-2015, 12:47 PM   #78
lubnaexperts
 
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Dear Spooky
thank u for your reply,I would like to ask How you know that your gut dont like food ?? what you feel exactly? as my son only took a very small amount of what I mentioned before and not feeling anything wrong its only the fecal calprotectin raised . his doctor told him yesterday to continue for 2 weeks and am surprised and we are waiting till 18th of january to the test again and see
01-12-2015, 05:49 AM   #79
Spooky1
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I have exactly the same issues. Even with bland fish and boiled potatoes my bloods and stools are not good. makes me feel that perhaps even if I think im in a better phase, I'm not. But then I always feel utterly exhausted. Maybe it's something to do with RA, or other issues. I am always searching for the best diet for me and the Crohn's but I haven't come across it yet. So I'm not surprised your son has these issues too.
01-19-2015, 01:33 PM   #80
Crohn2357
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I used modulen for nearly 29 months. Soft stool ( and some cramps ) was the usual till I diluted the formula. Just put less numbers of scoops on the same amount of water. Hope this will help.
Thank you very much. I also had more bms and some cramps with modulen and your method works.

Last edited by Crohn2357; 01-19-2015 at 03:38 PM.
01-19-2015, 01:50 PM   #81
Spooky1
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I can remember having to dilute it as I found it way too concentrated for my intestine. ~also the cartons of 028extra
01-19-2015, 03:38 PM   #82
Crohn2357
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Stopped the modulen, again. Cramps, D, softer stools, massively increased blood in stool, migraine, hemiplegia... Back to paleo again. I suspect casein and high sugar content are responsible for these effects.

Last edited by Crohn2357; 01-19-2015 at 04:00 PM.
01-19-2015, 04:55 PM   #83
Spooky1
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I suffer with Casein too. The sugar content is difficult for me too, and if I have my peg on more than 50mls per hour, especially at night, I am awake or having very vivid dreams. think this is the sugar levels.
02-07-2015, 02:34 PM   #84
lubnaexperts
 
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am here again , am so disappointed my son calprotectin raised again to 750 even he dont have any symptoms just eating very basic lawfflex diet its just white fish very very small portion with steamed rice also limited qty and boiled potato without skin and newly steamed chicken with very thin bread and all that once daily and taking full can of modulen and am really so sad , any help to decrease calprotectin and by the way his doctor raised the imuran from 50 to 100 mg before one week, please anyone can help me as my son has A level exams after 2 months and I dont want to start biologic
02-08-2015, 02:50 AM   #85
happy
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The only suggestion that I can make is to go back on full EN and then when the calprotectin has gone back to have him start eating on a full elimination diet rather than the LOFFLEX which is a partial elimination diet. I tried to resume eating on the LOFFLEX diet after full EN several times and relapsed very quickly each time. I did not achieve remission until I used the full elimination diet. However, I did not have access to calprotectin tests so I don't know if my symptoms correlated with fecal inflammation levels.
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02-08-2015, 03:14 AM   #86
lubnaexperts
 
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thank you for the answer , but he is refusing to come back on exclusive modulen again and really am diappointed
02-08-2015, 02:45 PM   #87
happy
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It is really hard to do EEN. If he isn't symptomatic, then I can understand that he doesn't want to do it. I was only successful because I was extremely ill and I really had no alternative at the time. I agree that it is really important that your son's mental well-being is considered and that he feels that he has some choice in his treatment. I also think that that your relationship with him, and his with his doctor, needs to stay healthy and intact. Some of the parents in the parents forum may be able to share their experiences about when to be a bit pushy with treatment options and when to back off.

I am tagging forum member helena101 for you. She did EEN, LOFFLEX and then a full elimination diet while on medication. She was monitored with fecal calprotectin tests as well and I remember that initially the levels kept climbing. She may be able to offer some suggestions. I haven't seen her on the forum for awhile, so I don't know if she will respond.
02-14-2015, 08:33 AM   #88
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happy really thank you for this nice answer
02-14-2015, 09:20 PM   #89
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hi
my son calprotectin is over 1000 again he is not feeling any symptoms except burping since one month now, doctor suggest to add humira inj and I feel so afraid to agree , am really crying what I should do , any suggestion plesssssssssssssse
02-14-2015, 09:30 PM   #90
Clash
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So sorry to hear that his disease is active. Regardless of symptoms or lack there of it is apparent from the FC test that there is inflammation occurring that left un treated or under treated can lead to serious irreparable damage and the perecentage of that risk is much higher than any risk of the rare side effects that come with some of the meds. Make a list of your concerns and questions and go over them with the GI. Good luck.
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